Tuesday 23 April 2024

Life MS and other things.

 I have no excuse thats worth trying, I'm not going to make any promises that are likely to come to nothing - I've just gotten really crap at this these days - I am so sorry 😕

The new job isn't a new job any more, I've been here for nearly 6 months now and I'm still loving it.

I've had another birthday - I'm 52 now 😱 - this doesn't seem possible how on earth can I be that old.

I'm due my next dose of Ocrevus a month today and I'm hoping it will be the usual non event.

What has changed ??

I've talked previously about PIRA (Progression Independent of Relapse Activity) and that it is something that I've been experiencing for a long time - it's the reason I went on Ocrevus in the first place and having O doesn't seem to have made that much difference.

What has changed of late is what having a migraine does to me. My predictable 2/3 focal migraines a year have increased and they're now having an effect on my whole body - really everything - to the point that I'm barely able to move my arms and legs at all for about 12 hours after one.

They're also happening every couple of weeks now .......

This has been incredibly frightening - because for the short time it happens it's like the worst, most terrifying feeling I've ever experienced physically and the effect it's had on my mental health has been equally debilitating. It's completely rocked my confidence, there have been tears, recriminations and raised voices and that's just for starters, the hopelessness and helplessness really took a big bite out of me.

It was Gareth who suggested a neuro physio appointment 

It's not going to help with the migraine, but it I can get back some of what I've lost in terms of mobility, walking and strength then hopefully the migraines won't be such a debilitating physical hit and as a bonus I'll function better for the rest of the time too.

Now I'm a program manager - I risk assess everything and 'just seeing one' particularly privately seems like a bit of a risk so of course I tried to book 3 assessments - 2 private practice and 1 with Berkshire MS Therapy Centre.

I've had 2 assessments (the 3rd couldn't schedule me in) but the 2 assessments by different facilities match in findings and exercises required to help improve things. and it's now a week on from the first one.

I'm doing all the exercises as I should at the frequency they recommended and I'm seeing improvements already.

I'm never going to run a marathon and would never want to BUT I would like to be able to walk around my local shop with a little decorum and not hanging on the shelves looking like I've been on the gin.

I walked around B&Q yesterday using a trolly as a walking aid but I left the wheelchair in the car. It was slow - inelegant in places and damn but the amount of brain power it takes to not tip my head back, keep my shoulders down and relaxed, my arse tucked in and lifting my knees whilst remembering to breathe and try to carry on a conversation is absolutely exhausting - but I did it.

Small victories 👍

I'm going into the office tomorrow for a day with our team and I'm planning on leaving Bob in the car. He's there IF I need him, not FOR the day because I will need him. 

It's taken years to happen, but over the years I've literally retrained my body to not walk properly and to do it in a way that not only causes me massive back problems, but damages my balance, my strength and my confidence.

Its going to take a lot of time and effort to retrain myself out of those bad habits relearn how to walk properly again but over the last week I've proven that I can do it - I just have to work super hard 'to' do it.

Of course improving my overall strength is a key part of this and I'm trying to do that at the same time because it's the repeated 'doing' and teaching the muscle memory the 'how' is only possible if I'm not asleep or slumped in a heap trying to work out if I have the energy to manage the 'can' of it all. 

To that end my recumbent bike is now being called back into service as is the sit up bench and some bimbling up and down the garden a few times a day is also being done. Small squats and leg lifts whilst I'm waiting for the kettle to boil, hip curls / back rolls whilst seated at my desk and some arm waving around to name but a few.

Yeah I'm sleeping well these days 😂😂

We've booked a week in Norfolk for June and I'd really like to be able to walk around the garden with the dogs so thats my 'mini target' for now.

I'd highly recommend getting an assessment done if you're struggling - the worst that could happen is they can't help make things a little better but you don't know if you don't give it a try.

So there we go - 4 months in a single bitesized update.

I hope you're well and looking after yourself

much love from me 


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